Sunday, April 27, 2014

2014 Transplant Games of America

Transplant News

From PKD Foundation

2014 Transplant Games of America

Houston, Texas
July 11-15, 2014

The Transplant Games of America is a multi-sport festival event for individuals who have undergone life-saving transplant surgeries. Competition events are open to living donors, organ transplant recipients, bone marrow recipients, and a limited number of corneal and tissue transplant recipients. More than an athletic event, the Transplant Games of America highlight the critical importance of organ, eye, and tissue donation, while celebrating the lives of organ donors and recipients.

This year, the PKD Foundation will attend the Transplant Games of America to celebrate with PKD families, transplant recipients, donors and donor families.

Are you participating in the Transplant Games of America in Houston, TX this year and joining the many transplant patients and donors that will be competing in a variety of activities from Badminton to Volleyball? Or, are you supporting a competitor at the games this year? If so, we want to hear from you! Tell us which team you will be joining and which events you will be competing in so that we can be there to cheer you on!

Tips for participants and supporters:
Register as a participant or purchase Event Supporter Passes at http://www.transplantgamesofamerica.org/registration.html
Transplant recipients and living donors competing in a medal event must complete a medical waiver available athttp://www.transplantgamesofamerica.org/registration.html
After you register with TGA, athletes that have not yet joined a team will be contacted by the Team Manager in the state in which you live
5K event is open to the public! More information http://www.transplantgamesofamerica.org/public5K.html
Hotel and lodging information can be found on the TGA website here, http://www.transplantgamesofamerica.org/area_hotels.html

Make sure you register with TGA! Learn more about the Transplant Games of America and register by visiting their website atwww.transplantgamesofamerica.org.
Have questions about registration? Download 2014 Transplant Games of America Registration Guide.

Are you wondering if you should participate? Here is what two sisters, donor and recipient have to say about the experience! [Read more]



PKD Gift of Life

From Pittsburgh Post Gazette, by Kathleen Ganster

Woman will donate a kidney to her sister


Like many sisters, Megan and Sarah Kellogg are close. But unlike many sisters, they are about to get a whole lot closer.

Megan, 31, will be donating one of her kidneys to Sarah, 28, on May 1. The two grew up knowing that someday this procedure would take place. Sarah was born with polycystic kidney disease, a potentially fatal genetic disease.

“They found out when I was about 6 weeks old. They discovered I had high blood pressure at a routine exam and then discovered cysts growing on my kidneys during testing,” Sarah said.

At the time, doctors thought they would do a transplant, but her health continued to be strong despite the high blood pressure and cysts. The sisters both said that Megan would have been the donor had the immediate transplant taken place, and as the two grew up in Pine, the transplant was something that they always understood.

“We never really talked about it; we just kind of knew it would eventually happen,” said Megan, who now lives in McCandless.

Sarah had a fairly normal childhood, although she had to take medication for her high blood pressure and kidney condition. She also wasn’t allowed to participate in contact sports as a student at Pine-Richland School District, but did play other sports, including softball, tennis and skiing.

“It wasn’t as if I was going to be playing football anyway, so it didn’t really make that much of a difference. I didn’t really know anything else since I was born with [the disease],” Sarah said.

Sarah joked that when she argued with Megan while the sisters were growing up, Megan would threaten to “keep her kidney.” [Read more]



PKD Fundraising

From Union Leader, New Hampshire, By JOHN KOZIOL

Piermont infant battling rare kidney disease; fundraiser planned

PIERMONT — The family of a three-month old girl battling a rare kidney disease is appealing to the public to help raise money for her care, and to help find a cure.

Ada May Laauwe, born Jan. 16, daughter of Kristen Coburn and William Laauwe, has been diagnosed with Autosomal Recessive Polycystic Kidney Disease, or ARPKD.

To cover the costs of her care at Boston Children’s Hospital, as well as the costs associated with her parents traveling to and staying in Boston, friends and family have organized a spaghetti dinner and silent auction to be held May 10 at the Warren Elementary School.

The fundraiser begins at 4:30 p.m.; tickets are $7 for adults and $5 for children ages 6 to 12, while those under 5 get in free. Donations can be made by mail to the Ada May Laauwe Fund, in care of Woodsville Guaranty Savings Bank, P.O. Box 86, Piermont 03779.

According to the Kirkwood, Pa.-based ARPKD/CHF Alliance, which is dedicated to serving patients who have ARPKD or Congenital Hepatic Fibrosis, the diseases have a genetic origin.

The alliance said the prognosis, “especially for those who survive the newborn period is far less bleak than once thought.” Infants with ARPKD who survive mechanical ventilation “have a good chance of survival,” with those who survive the neo-natal period having a five-year survival rate of between 80 percent and 95 percent, with survival well into adulthood being “common,” said the alliance.

Approximately a third of the ARPKD population will need dialysis or kidney transplant by 10 years of age, the alliance said, with a family member of Ada May noting in an e-mail that the baby has already had both kidneys removed, but is doing well and is on dialysis pending a transplant.

Sunday, April 20, 2014

Wearable Artificial Kidney Device in Animal Trials

Kidney Dialysis Care

From News-Medical, Press Release

NEPHRON+ project improves lives of kidney failure patients by developing wearable artificial kidney device

End stage kidney disease is a global public health problem with an estimated 2.4 million patients on dialysis. The number of new cases is rising (7-8% annually) due to population ageing and increased diabetes prevalence. The NEPHRON+ project is improving the lives of patients by developing a wearable artificial kidney device, enabled with information and communication technologies for remote monitoring.

Chronic kidney disease will affect one in ten of us at some point in our lives. For those of us unlucky enough to suffer renal failure as a result, the health consequences can be disastrous.

Without treatment kidney failure is deadly. However, even the best treatments are not ideal. Patients have to be treated with a dialysis machine at home or in hospital, sometimes as often as once every four hours. Patients spend a large part of their lives connected to dialysis equipment. What's more, the life expectancy of a person in their 20s who has suffered kidney failure is just 20 years, unless they're lucky enough to receive a donated organ.

All this could change, however. An EU-funded research consortium has been developing a wearable artificial kidney that would make it possible for dialysis patients to lead a more full and active life while adding another 10 to 16 years to their life expectancy.

The future of wearable dialysis

The NEPHRON+ WAKD (Wearable Artificial Kidney Device) is currently undergoing animal trials and will have to pass several rounds of stringent tests in humans before it is ready to be used by all patients with kidney disease. However, the project has reached a stage where commercial partners are ready to take the technology to the next stage. With kidney failure rates on the rise and pressure on hospitals to find more cost effective and clinically effective treatments, the market for wearable dialysis devices could be worth as much as a €15 billion per year, according to Dr Leonidas Lymberopoulos, project coordinator.

The advantages of wearable dialysis

The NEPHRON+ system works like a conventional dialysis machine, taking the patient's blood and passes it through a number of filters, removing waste products that would be excreted in a healthy patient's urine and making sure that the patient's blood pressure stays at a safe level. The patient can see the monitored data via their smartphone. What's more, the data can be sent to the patient's specialist doctor, so that their condition can be monitored at all times. But the wearable device will reduce the chance that a patient has to go to hospital for emergency treatment as constant dialysis is much more effective than intermittent treatment. [Read more]



From Niagara This Week, Niagara Falls, NY

Those unwanted items can help kidney patients

Spring is a time of renewal — and also a time to declutter.

And while most unwanted items end up in a landfill or at the curb for anyone to take, there is an alternative that can help rid a household of unwanted items and help someone who needs it.

The David Gregory MacKinnon Memorial Foundation has built a partnership with the Niagara Health System's Kidney Care Team that allows the foundation to offer financial aid to the renal/dialysis patients who need it.

David MacKinnon was on dialysis at the age of 17 his monthly medication costs were often in excess of $2,000 and he had no access to health benefits. During the 11 months leading up to David's death he was on dialysis for 12 hours per day, seven days per week.

On April 26 from 10 a.m. to 2 p.m., the foundation will be collecting unwanted textiles and electronics at One Stop Fireplace Shop at 4332 Drummond Rd. De-cluttering and donating will steer those unwanted items away from the landfill and put dollars into the pockets of David's Foundation to offer financial aid to renal patients in need.

For more information, call Foundation president Michelle MacKinnon at 905-246-0856.




From WIVB, Buffalo, NY, By Luke Moretti and Rose Ciotta

Dialysis patients demand backup power

Allen F. Scioli has been getting dialysis treatments for about five years, most recently at Southtowns Dialysis in Hamburg, which does not have backup power. He’s angered by the fact that the State of New York does not require dialysis providers to have it.

Scioli is speaking out and demanding changes when it comes to the lack of backup power at some dialysis facilities and he isn’t the least bit worried about ruffling feathers.

“I kept asking what happens if we have a power outage. You’re going to put everybody here in danger,” Scioli, a retired West Seneca police lieutenant said. “I figure who’s not going to like me? The administrators? The corporation? I could care less. People are what counts.”

Kidney dialysis is a life-support treatment that uses a special machine to filter harmful wastes and excess fluids from the blood. The patient is hooked up to a machine that takes over the kidneys’ job of filtering blood.

Traumatic for patients

“It’s a very, very traumatic experience for a patient to go on dialysis,” says Dr. Brian Murray, chief medical officer at Erie County Medical Center, which operates a kidney dialysis clinic that has backup power because it’s part of the hospital. [Read more]



From MarketWatch.com, Press Release


The Renal Physicians Association released a free iPad app to assist nephrologists with shared decision-making (SDM) and pain and symptom management for acute kidney injury (AKI), chronic kidney disease (CKD) and end-stage renal disease (ESRD) patients at the point of care.

Adam Weinstein, MD, a RPA Board Member and the leader of the app development team, explains that the RPA SDM Toolkit app is an interactive, workflow-driven version of the RPA's Clinical Practice Guideline on Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd Edition. It offers nephrologists the tools and recommendations with which they can aid adult and pediatric patients who have AKI, CKD, or ESRD in initiating, withholding and withdrawing dialysis. This app combines the benefits of the evidence-based guideline -- consensus expert opinion informed by ethical principles, case and statutory law, and systematic review of research evidence -- with a step-by-step approach to working through the process of decision making and symptom assessment with the patient and family in real time. [Read more]



From IT Business Net, Press Release

Dialysis Clinic, Inc., Selects Sandlot Solutions to Support Comprehensive End-Stage Renal Disease Care Initiative

New Technology Platform Will Aid a Company-Wide Initiative to Improve Quality and Care Coordination Across All Facilities

Sandlot Solutions, a leading community health interoperability and analytics provider, today announced the beginning of a five-year contract with Dialysis Clinic, Inc. (DCI), a nonprofit corporation providing comprehensive care for patients with kidney disease. Sandlot's health information technology solutions will help DCI achieve effective clinical interoperability. The ability to exchange clinical data and share information across health systems will enable DCI to deliver exceptional care management and improved patient outcomes. A certified Medicare dialysis provider operating in 28 states, DCI will implement two Sandlot modules, Sandlot Connect, for comprehensive data gathering and exchange, and Sandlot Dimensions, which combines a data warehouse with business intelligence tools.

"We are honored to partner with Sandlot Solutions to improve the coordination of care for our patients. Currently many providers often operate in separate silos and are unable to see the care given by other providers to patients with kidney disease. With our new partnership with Sandlot, different providers in each community will be able to obtain a better view of the overall care of patients with kidney disease and will be able to communicate in a secure manner as they partner to improve care for patients with kidney disease. In addition, we will have the capacity to evaluate the cost of care and determine which of our new interventions are most effective at providing better care, at a lower cost to patients with kidney disease," said Doug Johnson, MD, Vice Chairman of the DCI Board of Directors.

The technology solutions provided by Sandlot will also support DCI's long-term goal of becoming a CMS ESRD Seamless Care Organization (ESCO). ESRD patients make up 1.3% of all Medicare beneficiaries and nearly 7.5% of U.S. Medicare spending. This CMS initiative is designed to test new payment and service delivery models in order to achieve higher quality and more patient-centered care for the ESRD population. [Read more]



Gift of Life

From Sky News, United Kingdom, By Siobhan Robbins
Big Increase In 'Stranger' Kidney Donations

Altruistic donations rise dramatically in seven years but thousands of patients are still on the waiting list for transplants.

The number of people donating their kidneys to strangers has risen dramatically in the last seven years.

So-called altruistic donation first became possible in 2007. In that year, just three kidneys were donated but last year some 107 donations took place.

Tom Higgs, 13, waited for a transplant for five years after his kidneys failed. He had to have dialysis treatment 11 hours a day and he spent months in hospital until a donor was found.

"I would still be on dialysis but instead of having a tube I would have the needle kind of dialysis where I had to go to the hospital every day - that would have been even harder," he said.

Despite the rise in altruistic donations, some 5,650 people are currently waiting for a new kidney in the UK.

Tom Cledwyn, 28, decided to become a living donor, but he has no idea who the recipient was.

"Whilst my mum didn't have kidney failure, that doesn't mean that someone's mum doesn't," he said.

"Donating to someone I didn't know felt as compelling as if one of my friends or family members suffered from kidney failure."

Only a kidney or a lobe of liver can be given by a living donor. [Read more]



PKD Research

From 7th Space, Press Release

Hyperuricemia and deterioration of renal function in autosomal dominant polycystic kidney disease

The role of hyperuricemia in disease progression of autosomal dominant polycystic kidney disease (ADPKD) has not been defined well. We investigated the association of serum uric acid (sUA) with renal function and the effect of hypouricemic treatment on the rate of renal function decline.

Methods: This is a single-center, retrospective, observational cohort study.

A total of 365 patients with ADPKD who had estimated glomerular filtration rate (eGFR) >= 15 mL/min/1.73 m2 and who were followed up for >1 year were included in our analysis. Hyperuricemia was defined by a sUA level of >= 7.0 mg/dL in male and >= 6.0 mg/dL in female or when hypouricemic medications were prescribed.

Results: Hyperuricemia was associated with reduced initial eGFR, independent of age, sex, hypertension, albuminuria, and total kidney volume.

During a median follow-up period of over 6 years, patients with hyperuricemia showed a faster annual decline in eGFR (-6.3% per year vs. -0.9% per year, p = 0.008).

However, after adjusting for age, sex, hypertension and initial eGFR, sUA was no longer associated with either annual eGFR decline or the development of ESRD. Among 53 patients who received hypouricemic treatment, the annual eGFR decline appeared to be attenuated after hypouricemic treatment (pretreatment vs. posttreatment: -5.3 +/- 8. 2 vs. 0.2 +/- 6.2 mL/min/1.73 m2 per year, p = 0.001 by Wilcoxon signed-rank test).

Conclusions: Although hyperuricemia was associated with reduced eGFR, it was not an independent factor for renal progression in ADPKD. However, the correction of hyperuricemia may attenuate renal function decline in some patients with mild renal insufficiency.

Author: Miyeun HanHayne Cho ParkHyunsuk KimHyunga ChoHyuk HuhJoon Young JangAh-Young KangSeung Hyup KimHae Il CheongDuk-Hee KangJaeseok YangKook-Hwan OhYoung-Hwan HwangCurie Ahn
Credits/Source: BMC Nephrology 2014, 15:63



Associated Research

From The Times of India, New Delhi, by Durgesh Nandan Jha

Delhi scientists trying to grow liver in lab

You may have heard of kidney dialysis but did you know that even the liver can be flushed of its toxins using a similar method? At the Institute of Liver and Biliary Sciences in New Delhi, the doctors have been using this technology to give a window period for liver failure patients on the wait for transplant.

Not just that, using the concept of dialysis, the scientists here are also working to develop a bioartificial liver which can mimic the natural functions of human liver.

"In dialysis, only the toxins can be cleared from the blood. But the liver has other functions like maintaining blood sugar levels, synthesizing bile acids which take care of cholesterol, and secreting proteins crucial for blood clotting. The idea behind developing a bioartificial liver is to achieve near-natural function so that patients suffering from the organ failure can get a longer window period for transplant," said Dr S K Sarin, director, ILBS.

The institute, he said, has been working on the project for over two years and till now they have only been able to identify some of the human liver cells that can be cultured and induced to perform the hepatic functions by processing plasma of liver failure patients. "The matrix on which the cells will be cultured is being developed by IIT Kanpur researchers," Dr Sarin added.

The ILBS director said that many centres across the world are working on the project to develop a bio-artificial liver but there has been no breakthrough yet. Every year, one lakh people die in the country due to liver failure. At most, 1,000 lives are saved with liver transplant-the only treatment option available to such patients-due to lack of donors. [Read more]

Sunday, April 13, 2014

Dialysis: Death Risk Lower at High Altitude

Kidney Dialysis

From Renal and Urology News, by Stephen Cho


Dialysis patients who live at high altitudes have a significantly reduced risk of mortality, according to a study published inHemodialysis International.

Kamyar Kalantar-Zadeh, MD, MPH, PhD, of the University of California Irvine Medical Center and colleagues studied a national cohort of 144,892 dialysis patients with a follow-up of 801 days to examine the connection between residential altitude and all-cause mortality in these patients.

All patients had stage 5 chronic kidney disease and were undergoing dialysis treatment from July 2001 to June 2006. The investigators compiled data from the U.S. Geological Survey to link residential zip codes with patient information.

In fully-adjusted analysis, the researchers found that high residential altitude, defined as 6000 feet or greater, was associated with a significant 8% reduction in all-cause mortality risk in dialysis patients compared with living at less than 250 feet.

“These results support previous findings, although the effect size we observed was smaller in comparison,” the authors noted.

Patients living in higher altitudes were more likely to be white, married, on peritoneal dialysis, and receiving catheter dialysis access, compared to those on lower altitudes (less than 250 feet). They also displayed higher hemoglobin and creatinine levels, but lower parathyroid hormone levels. [Read more]



From El Paso Times, El Paso, TX, By Victor R. Martinez

Informed Patience: 13 years of dialysis hones waiting game of El Paso woman on kidney donation list

El Pasoan Veronica Carroll sits patiently, three hours a day, three times a week.

Every Tuesday, Thursday and Saturday at 5 a.m. the medical staff at an East El Paso dialysis center connect her to a dialysis machine — artificial kidneys that perform most, but not all, kidney functions for patients who have permanent or temporary renal failure.

On one arm are two 15-gauge needles and a blood pressure cuff on the other.

The dialysis machines use hemodialysis to cleanse the blood and balance its constituents. With this process, the patient's blood is circulated through the machine where it is filtered and balanced for electrolytes, pH levels and fluid concentration before being returned to the patient.

Not a fun experience at all.

"It just drains you emotionally and physically," she said. "You're just so tired afterward. Some people feel really good and alive but most of us feel really tired to the point where we don't want to do anything. Sometimes we are even too tired to think."

Carroll has been on dialysis since 2001, the year her son Logan Perrine was born.

"I had very high blood pressure during the pregnancy which somehow caused my kidneys to fail," she said. "Now, I have to watch what I eat. I can't eat bananas, I can't have pizza or any dairy. We are really restricted on our liquid intake."

Despite 13 years of dialysis, it's still not easy for Carroll.

"To sit in a chair for as long as we do, it's difficult," she said. "Some people sit in that chair for four to five hours, three times a week. To just sit in that chair and not move your arm because you have 15-gauge needles in your arm, is not easy."

The anxiousness Carroll feels during treatment remains a constant.

"You want to get up and move so bad but you can't," she said. "You can take a nap but other machines will go off around you and wake you up because other patients are there. You do get to talk to other patients, which is nice and the techs and the nurses are very friendly but that's it."

Carroll is also waiting patiently for a kidney donation. [Read more]



From The Spec, Hamilton, Ontario, Canada, by Molly Hayes

Home dialysis is old hat for Ancaster granddad

After almost 15 years of practice, Bob Milne is a pro at dialysis.

In fact, at 90 years old, the Ancaster man just might be the oldest home-based hemodialysis patient in Ontario — or at least the oldest who self-administers their treatment.

"I'm something, aren't I?" Milne says with a chuckle.

When he was diagnosed with kidney failure in 1999, the St. Joseph's Healthcare Hamilton Kidney and Urinary Services team immediately got Milne and his wife, Ruth, involved in its home-based dialysis training program.

Now, a decade and a half later, they have the routine down pat.

Three days a week, Milne gets up at 5:30 a.m. to prep his machines for the four-hour treatment, which will cycle his blood through a filtering process, eliminating waste.

Next step is prepping the coffee, and finally, inserting the needles.

"I like to get it finished early," he says.

Even in the comfort of his own home, he admits dialyzing is no walk in the park. But it beats making the thrice-weekly drive to the Stoney Creek clinic — especially when the weather's bad.

Ruth, 83, his wife of 62 years, agrees.

Of the approximately 650 dialysis patients at St. Joe's, roughly 60 do their treatments at home. The flexibility is the main draw, says registered nurse Linda Mills.

"You can have a life without dialysis being your life," says Mills, who has worked with the Milnes since day one.

It's not a money-saving program for St. Joe's, she stresses. It's about providing patients with choices.

. Ruth says Mills is "our pet," but the family is close to the entire staff. All the nurses came out to a 90th birthday party for Milne, who says with a smile that he's not one for parties but didn't mind the nurses. [Read more]



From Digital Journal, Wellesley, MA, Press Release


BCC Research (http://www.bccresearch.com) reveals in its new report, Renal Dialysis Equipment: Technologies and Global Markets, the global dialysis equipment and accessories market is expected to grow to nearly $18.8 billion by 2018, with a five-year compound annual growth rate (CAGR) of 7%. Peritoneal dialysis, the fastest-growing segment, is moving at a significant 8.2% CAGR.

Dialysis equipment and accessories are used extensively in dialysis centers, hospitals, and home care settings for artificial renal replacement therapy of ESRD and acute kidney injury (AKI) patients. Peritoneal dialysis, the largest and fastest moving sector in this market, is expected to reach $5.4 billion in 2018, due to the rising cost pressures, and clinical evidence demonstrating its worth in improving quality of life.

The Hemodialysis (HD) equipment market, the second-largest and fastest-growing sector, is projected to reach nearly $2.4 billion by 2018 and register a CAGR of 7%.

"The HD market is expected to be saturated in Western countries by 2018," says BCC Research healthcare analyst Krishanu Bhattacharjee. "Growth is likely to be driven by the establishment of new dialysis centers and hospitals in emerging markets such as India, China, and Thailand. Market growth is also expected to be complemented by the launch and subsequent acceptance of cost-effective, portable HD equipment." [Read more]



From Business Day, Lagos, Nigeria, by Alexander Chiejina

Private dialysis business booms on renal disease upsurge

The growing prevalence of diabetes, hypertension and a large susceptible elderly population, are rapidly driving up the number of people developing end stage renal diseases (ESRD) in Nigeria, spurring an upsurge of new investments in dialysis business valued at $314 million (N54 billion).

The number of dialysis patients in Nigeria is estimated by experts at 50, 000 with 15, 000 patients developing kidney diseases annually. Demand for this healthcare portfolio is said to far outstrip supply, with only 76 dialysis units to serve the affected population size in Nigeria.

Private sector players operate only 34 of the dialysis centres, while government operates 42. Lagos, said to be Nigeria’s most populous state, with 22 million inhabitants, accounts for 20 dialysis units (with 15 privately run and 5 government run) besides the two kidney transplant units in Lagos State(1 private and 1 public).

While people with ESRD are required to undergo three dialysis sessions a week (each lasting between three and four hours) at a cost of between N25, 000 and N 30, 000 per session, this leaves several patients with high out-of-pocket payment for healthcare services and at the mercy of family and well wishers.

Experts say the number of sufferers, mostly middle-aged Nigerians, is alarming for a country which depends on its productive young and middle-aged for development.

Industry watchers say this situation undermines Nigeria’s quest to meet the 30 percent Universal Health Coverage target by 2015 which it set for itself, with the present health insurance cover able to serve only three to six dialysis sessions per individual, leaving the patient to pay for the remaining 30 sessions worth over N900, 000. [Read more]



Organ Donation

From Record Online, Time Herald-Record, Hudson Valley, NY, By Beth Kalet

New York is 49th out of 50 states in organ donation

Here's a surprising fact: New York ranks 49th out of the 50 states in percentage of registered organ donors.

That's a situation the New York Organ Donor Network wants to change. "It's a shocking statistic, and we're not very happy about it," says Julia Rivera, the network's director of communications.

That's how Patricia Mayer Van Duser feels, too. Born and raised in Newburgh, Van Duser has been teaching fifth-grade at Fostertown Elementary School for more than 20 years. Since January 2013, she's been on the waiting list for a donor kidney.
A frustrating wait

Van Duser carries a beeper that will alert her as soon as a donor match has been made for her. When that happens, she and two other matches will have to hurry down to Columbia Presbyterian Hospital in New York City to see which one of them will receive a donor kidney.

Van Duser, who will turn 50 in May, is one of 10,000 New Yorkers waiting for an organ transplant today, according to the Donor Network. Nationwide, some 130,000 people are on waiting lists. A single donor has the potential to save up to eight lives, Rivera points out. And that's why it's so frustrating to her that more New Yorkers haven't signed up to save a life.

"The big deal here is that people don't understand that when you sign up on the registry, it simply provides your family an opportunity to know your wishes. It documents your decision so nobody can change that," Rivera says.

There are two easy ways to become a registered organ donor in New York. The state has recently simplified its donor registry that accompanies driver license applications and renewals. And, Donor Network has its own site: donatelifeny.org/hate-the-wait/

[Read more]



Kidney Research

From Balkans.com, Business News

Unlocking the huge potential of mobile healthcare

Neelie Kroes EU, Vice-President of the European Commission, responsible for the Digital Agenda, said: "mHealth is just one of the benefits of a Connected Continent – helping patients, doctors and carers take control, wherever they are. From simple apps which help you stick to your exercise regime – to monitoring tools for those on kidney dialysis. I am delighted that the EU is so committed to this fascinating area. The EU has already invested over €100 million, with about €95 million up for grabs over the next two years. And we are now consulting on how best to unlock the huge potential of mobile healthcare."

Four EU-funded projects making the most of mHealth 1. Patients with kidney failure to get a new lease of life with Nephron PlusChronic kidney disease will affect one in ten of us at some point in our lives. For those of us unfortunate enough to suffer renal failure, the health consequences can be disastrous and the treatments very complex. The @nephronplus project received €5 million of EU funding to improve the lives of patients by developing a wearable artificial kidney device, whose indications can be remotely monitored by patients on their smartphone, and by medical staff.

A more full and active life. "Continuous, 24/7 dialysis with a wearable device offers a smooth and uniform extraction of toxins over the day similar to the natural kidney. This improves the health condition tremendously and eliminates the 'after dialysis sickness syndrome' that many patients suffer from", explains Frank Simonis, technical manager of NEPHRON+. Constant remote monitoring of data is also a key feature of the system. Via a personal renal care app on their mobile device, patients will be able to consult and manage data, and include alarm settings. Their doctors will also be able to monitor the treatment, and remotely adapt it. According to Simonis "The NEPHRON+ system will make it possible for dialysis patients to lead a more full and active life."  [Read more]



From Nephrology News


On April 9, the president of the American Society of Nephrology (ASN) urged Congress to boost scientific innovation in kidney research through a federal prize competition. In her testimony before the House Science, Space, and Technology Subcommittee on Research and Technology, ASN President Sharon M. Moe, MD, FASN, voiced support for federal prize competitions as a mechanism to incentivize new approaches to renal replacement therapy that could reduce escalating Medicare costs and improve care for the 450,000 Americans with kidney failure.

“I feel strongly that current scientific knowledge in the understanding of the kidney is at a level that makes such life-altering innovation a real possibility. I firmly believe American ingenuity is ready and willing to take this basic knowledge and turn it into a transformative, cost-saving technology that offers real hope for a better life to patients suffering through the current consequences of dialysis. Together, we can offer hope to the 20 million Americans with kidney disease who fear dialysis is in their future,” said Moe, who is a professor of medicine and director of the Division of Nephrology in the Department of Medicine at the Indiana University School of Medicine.

Her testimony at the Prizes to Spur Innovation and Technology Breakthroughs hearing highlights how a federal prize competition for kidney disease would mobilize the development of new tools to address one of the costliest health care challenges the U.S. government faces today.

Nearly 450,000 Americans with kidney failure rely on the Medicare End-Stage Renal Disease (ESRD) Program for lifesaving dialysis. The ESRD Program is the only federal health entitlement program that provides coverage regardless of age or disability. Caring for people with kidney failure costs Medicare nearly $35 billion annually. Patients with ESRD account for less than 1% of the Medicare population but their care constitutes 7% of the program’s budget. [Read more]



From Nephrology News
 
Poor quality of life may contribute to kidney disease progression

Kidney disease patients with poor quality of life are at increased risk of experiencing progression of their disease and of developing heart problems, according to a study appearing in an upcoming issue of the Journal of the American Society of Nephrology (JASN). The findings suggest that quality of life measurements may have important prognostic value in these individuals.

Quality of life has been well-studied in patients with end-stage renal disease, but not in patients with CKD who do not yet require dialysis, according to background information in the study. To gain a better understanding of quality of life among such patients, Anna Porter, MD, from the University of Illinois at Chicago, and her colleagues studied 1,091 African Americans with hypertensive CKD enrolled in the African American Study of Kidney Disease and Hypertension Trial and Cohort Studies. The researchers assessed health-related quality of life, including mental and physical health, through surveys.

During approximately 10 years of follow-up, lower physical and mental health scores were linked with increased risks of experiencing cardiovascular events or dying from heart-related causes as well as with experiencing progression of CKD or dying from kidney-related causes.

“Quality of life is extremely important to patients and is impacted by kidney disease,” said Porter. “In order to better serve our patients, physicians need to gain a better understanding of the negative impact that kidney disease has on quality of life, and to recognize the association between quality of life and other outcomes.”

Sunday, April 6, 2014

PKD Comics in Syndicate, POP Remedy - Cause Focused Comics

PKD Young Superheros

From Washington Post, Comic Riffs BY MICHAEL CAVNA

Upon National Kidney Month, cartoonist launches syndicate site fueled by son’s disease

JARRETT OSBORNE, father of Clark Kent Osborne, says he has more than a bit of “a Superman complex.” So when his second son Harrison was born two years ago this month with polycystic kidney disease — on World Kidney Day — the Toronto-based cartoonist and designer felt compelled to leap into action.

“I won’t always be a teacher but I will always be an artist, and with that comes power,” Osborne tells The Post’s Comic Riffs. “Artists can change the world — this we know — so Harrison was that wake-up call I needed.”

That call to action has just led to his launch of POP Remedy, an online syndicate that aims to support cause-focused comics. Osborne has kicked off his site this month with his comic strip “Watter,” with the aim to fight kidney disease.

Comic Riffs caught up with Osborne during our own nation’s National Kidney Month to talk about his passion for art, his commitment to a cause — and just what roles “Garfield” and “Sherman’s Lagoon” are playing in all of this: [Read more]



Kidney Issues

From Crain's Chicago Business, By Andrew L. Wang


Highland Park Hospital is getting out of the outpatient dialysis business, as fewer hospitals find they can make money treating end-stage renal disease.

One of four hospitals in NorthShore University HealthSystem, the 149-bed Highland Park facility is proposing to transfer the roughly 100 patients using its 20-station facility to a similarly sized unit to be set up nearby by Fresenius Medical Care, a division of German conglomerate Fresenius SE & Co.

The new 12,600-square-foot unit would sit in leased space at 1657 Old Skokie Road in Highland Park and cost about $14.6 million to outfit, according to two applications filed by the hospital and the company with the Illinois Health Facilities and Services Review Board, which must approve the move.

A spokesman for NorthShore declined to comment on the applications, as did a spokeswoman for Fresenius, whose U.S. operations are based Waltham, Mass.

The hospital notes in its application that operating a dialysis unit “is no longer consistent with the acute care mission of a community hospital, such as Highland Park Hospital. As a result, only a handful of Chicago-area hospitals continue to provide the service.”

Indeed, according to state figures, there are fewer than 10 hospital-based outpatient dialysis centers out of about 220 in Illinois. Of 5,560 such facilities nationally in 2011, 10 percent were in hospitals, according to the Medicare Payment Advisory Committee, or MedPAC, an independent body that advises Congress on Medicare issues.

DOLLARS AND CENTS

“Hospitals have been shedding this service for years,” said John Sullivan, an associate professor of finance at Boston University who has studied the dialysis industry.

The reason, he said, is economic. [Read more]



From ABC.net.au, Australia, The World Today with Eleanor Hill


Research released today by Sydney University's Kidney Research Group warns that the increase in diabetes in Australia is having grave consequences for kidney health.

It reveals that the spike in diabetic kidney disease across Australia is one of the largest increases of any developed country.

Thomas Oriti reports.

THOMAS ORITI: Kidney Health Australia says diabetes is "out of control" and is now the main cause of kidney failure in Australia.

Dr Timothy Mathew is the organisation's national medical director.

TIMOTHY MATHEW: The rise in the incidents of diabetes will likely continue and the number of people on dialysis and transplantation will likely double in the next 15 years. It puts costs around this, which are enormous, and illustrates that the kidney problem is one of the main, if not the main cause of people with diabetes dying early.

THOMAS ORITI: Dr Matthew is warning the condition is now reaching epidemic proportions, and is having an enormous impact.

TIMOTHY MATHEW: People on dialysis and transplantation are costing something like a billion dollars a year at the current time. I mean each individual on dialysis costs $60,000 to $80,000 per year so it's a high cost treatment. This report identifies that at least an extra billion is spent on the early part of kidney disease, that is, well before you start dialysis and transplantation.

THOMAS ORITI: Dr Mathew describes it as frightening pattern and the trend isn't slowing. [Read more]



Gift of Life

From Daytona Beach News Journal, By Jim Haug

April is month for recognizing organ donors

The France Tower at Halifax Health Medical Center, 303 N. Clyde Morris Blvd., will glow green every night in April in recognition of Donate Life Month, honoring organ donors. A flag-raising ceremony also is scheduled for 3 p.m. April 7.

Mike Mulrooney, the manager of the Halifax Health Transplant and Dialysis Services, spoke to The News-Journal about the importance of organ donation.

What is the waiting list for a donated organ?

There are about 15,000 total transplants nationally with a wait list of 115,000. The need far outweighs the ability to transplant. There are about 80,000 on the kidney-only waiting list. Here at Halifax our wait list is 45 patients for kidney transplants. We’re fortunate in Florida. We have a shorter waiting time. It’s about two years here in Central Florida. In states like New York or California, the wait is as long as five or seven years. [Read more]



From White Bear Press, by Debra Neutkens/Regional Editor

The gift of life

April is National Donate Life Month.

A proclamation read by Mayor Jo Emerson before last week’s City Council meeting is meant to shine a light on people like Kevin Maijala. He’s been on the University of Minnesota’s kidney transplant list for 16 months.

The mayoral proclamation, adopted by many cities throughout the state, brings attention to organ, eye and tissue donation — “a gift which extends hope and healing to those in need,” it read. According to statistics provided by the mayor, 3,000 Minnesotans are waiting for life-saving transplants. A serious shortage of transplantable organs means only 28,000 transplants occur each year.

Average wait time for a kidney is 4.5 years, said Maijala, who suffers from polycystic kidney disease, a congenital condition diagnosed when he was 7 years old.

While he waits for a new kidney, the White Bear Lake resident doesn’t let renal failure stop him from leading a normal lifestyle and maintaining a full-time job as manager of curriculum development with the Minnesota Historical Society.

“I only have 20 percent kidney function, so I get tired and the treatments can be painful, but I golf, bowl, and play softball,” Maijala said. He and wife Amy have two children and the husband and father makes a point to stay active for his family. There are things he can’t do, like swim in a lake or river, but he can swim in the ocean or pool.

Daily treatment is done by home dialysis. Fluid inserted through a port in the lining of his abdominal cavity, called the peritoneum, absorbs toxins and other waste products like a kidney would. The 2 liters of fluid must be drained and replaced every six hours. [Read more]



PKD Treatments

From Renal & Urology News, by Jody A. Charnow, Editor

Renal Artery Embolization May Ease ADPKD Symptoms

Reducing renal volume using a renal artery embolization technique is feasible and effective for treating symptomatic autosomal dominant polycystic kidney disease (ADPKD), Japanese researchers concluded in a report presented at the Society for Interventional Radiology annual meeting suggest.

Rie Yoshida, MD, of Kansai Medical University Hirakata Hospital in Hirakata City, Osaka, and colleagues studied 5 ADPKD patients (4 women and 1 man) who underwent renal artery embolization using a mixture of N-butyl cyanoacrylate (NBCA) and iodized oil with low density.

All patients had severe refractory symptoms secondary to enlarged kidneys after initiation of dialysis. Bilateral and unilateral renal artery embolization was performed in 4 patients and 1 patient, respectively. Angiography was performed to confirm complete occlusion of the entire renal artery. Among nine kidneys, renal volume reduction was evaluated using computed tomography at 1, 3, 6, and 12 months after treatment.

Results showed that the technical and clinical success was 100%. None of the patients underwent another renal artery embolization procedure or additional volume reduction therapy. One patient had a hematoma at the puncture site. Symptoms decreased markedly in all patients and did not recur.

The mean basal renal volume before embolization was 2,222 cm3. The mean volume reduction rates were 83.0%, 65.5%, and 62.9% at 1, 3, and 6 months, respectively. At 12 months, the mean volume was 1,411 cm3 and the volume reduction rate was 50.9%, which was statistically significant.

“Transcatheter renal artery embolization with NBCA for symptomatic ADPKD is a feasible and effective procedure that offers relief of symptoms as well as renal volume reduction,” the authors concluded in their study abstract.



PKD Research

From 7th Space, Press Release

Novel mutations of PKD genes in the Czech population with autosomal dominant polycystic kidney disease


Autosomal dominant polycystic kidney disease (ADPKD) is the most common hereditary renal disorder caused by mutation in either one of two genes, PKD1 and PKD2. High structural and sequence complexity of PKD genes makes the mutational diagnostics of ADPKD challenging.

The present study is the first detailed analysis of both PKD genes in a cohort of Czech patients with ADPKD using High Resolution Melting analysis (HRM) and Multiplex Ligation-dependent Probe Amplification (MLPA).

Methods: The mutational analysis of PKD genes was performed in a set of 56 unrelated patients. For mutational screening of the PKD1 gene, the long-range PCR (LR-PCR) strategy followed by nested PCR was used.

Resulting PCR fragments were analyzed by HRM; the positive cases were reanalyzed and confirmed by direct sequencing. Negative samples were further examined for sequence changes in the PKD2 gene by the method of HRM and for large rearrangements of both PKD1 and PKD2 genes by MLPA.

Results: Screening of the PKD1 gene revealed 36 different likely pathogenic germline sequence changes in 37 unrelated families/individuals.

Twenty-five of these sequence changes were described for the first time. Moreover, a novel large deletion was found within the PKD1 gene in one patient.

Via the mutational analysis of the PKD2 gene, two additional likely pathogenic mutations were detected.

Conclusions: Probable pathogenic mutation was detected in 71% of screened patients. Determination of PKD mutations and their type and localization within corresponding genes could help to assess clinical prognosis of ADPKD patients and has major benefit for prenatal and/or presymptomatic or preimplantational diagnostics in affected families as well.